U.S. Votes to Track ME/CFS on BRFSS Survey

Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system.  State health departments use the data collected to plan health projects and allocate resources; national institutions like the CDC use the aggregate data to monitor national health trends.
Many of you took part as evidenced by the number of comments and questions we received.  We are happy to report your actions made a difference!  At the national BRFSS meeting in April, state officials voted to include 2 questions about ME/CFS as  “optional” on the national BRFSS survey.
The questions concerned whether someone had ever been diagnosed with ME/CFS by a healthcare professional and whether they are still sick.  In previous years, not enough officials voted to include these questions at all. To reach “optional” status, at least 70% of state officials had to agree that the questions were important. This status highlights the importance of ME/CFS and also means states who use the questions will receive some funding from the CDC and their state health departments to ask them as part of their state’s BRFSS. (Very few survey items are ever voted in as Core immediately and deemed mandatory for the survey.)
In the next few months, some states will begin field-testing the questions. We will keep an eye on this issue and inform you what happens and what next steps to take.
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5 thoughts on “U.S. Votes to Track ME/CFS on BRFSS Survey”

  1. ME is clearly an infectious disease and scientists must start looking at the saliva from patients because it is being passed around casually.

  2. ME Action, you are unstoppable, so impressed. You give hope to us and thank you!!

  3. Maschelle Mashburn

    Excellent news! I was diagnosed with ME/CFS and then the doctors and nurses can’t remember what it’s even called. I keep getting asked “what is the name of that thing that youve got? ” to wit I reply, then explain the punctuation, and they type it in… next they say “There’s no code for that. I need the other things you have to make you eliguble for….”
    This is a much needed thing. We need to be tracking this, because I’m almost certain it’s contagious and that is frightening.

  4. I hope that the data is good. Asking people if they have Chronic Fatigue Syndrome on a survey is likely to be very inaccurate because people mix it up with all sorts of other conditions or just tiredness.

    1. Maschelle Mashburn

      I thought the phrasing was “Have you ever been DIAGNOSED with ME-CFS? and:” If so, are you still sick? “? Those are specific to a doctor having made the diagnosis, not a claim from someone. This would leave out a possibly as yet undiagnosed ME-CFS patient as well. That very fact underscores why we need to be tracking this somehow officially. It will raise awareness of the medical community, our government, etc. and lead to more research, faster diagnosis of patients who may still have a chance to stop the diseases progress. I’m excited!

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